Karen Martin

Earl, thanks for the reply.  I will look into the idea of a bluetooth app for that.  Who would have thought of it?  Well, not me, evidently!

Hey, Christie.  Before my condition curtailed my mobility so much, I used to help my neighbor walk her two dogs.  It was a lot of fun and I think your suggestion of volunteering to walk someone else’s dog or help out at a shelter would be great.  Between the companionship and the fresh air and exercise, you can’t help but boost your mood and health!

Richard, I love your explanation for the use of inhalers!  It certainly is more helpful than anything my docs have ever told me.  Always nice to get educated!  🙂

Linda, I wonder if your throat is irritated enough that you are getting tiny amounts of blood in your sputum.  That might make it somewhat salty.  Everyone’s body chemistry is unique, which might account for why it is so bad you get sores from it.  If you are using any sort of inhaler, that might also account for the sores on your tongue.  Be car…[Read more]

Like Wendy, I am an animal lover.  My kids and grands have dogs who are a delight to watch romp and play.  A good vacuuming after they visit is a must, but well worth it to me.  I have a sweet cat who is my buddy.  He is very gentle and seems to pick up on my moods and is extra cuddly on days when that is what I need.  He is an indoor-outdoor guy,…[Read more]

I have a small container that I carry in my pocket.  Just count out my nine pills in the morning (the bottle is beside the coffee maker) and I am all set.  Never have to worry that I am not at home.

Ben, I was happy to see someone else cite the odds and the post-transplant lifestyle as reasons to question whether or not to go this route.  My daughters are adamant they would do “anything” for me.  But I’m a widow and feel that whereas a spouse might be there for me, it is somewhat different to ask the assistance of other family members.  My hu…[Read more]

I have always found it fascinating to see both nurses and doctors smoking in the designated areas around hospitals.  Or patients with their IV stands alongside.  Not that this is any solution for your problem, Char, but I always have the urge as I wheel my oxygen tank past such people to say, “Keep that up and you too can have one of these!”

As a…[Read more]

Thomas, I am also not excited at the prospect of suffocating at the end of my days.  I will tell you that my husband was hospitalized in his final days for other reasons and was medicated to alleviate “oxygen hunger.”  I would expect that if one is hospitalized or in hospice care at the end stage that this would be available.  Or, as I tell my ch…[Read more]

Linda, after reading your post about the silent GERD, it makes me wonder if some of us who are taking anti-fibrotic meds might be in the same boat.  It would certainly be less expensive to treat things this way.  Sounds like something worth exploring with my pulmonologist.

I also use Zyrtec and Flonased (generic forms for both) for the drippy nose.  (They are both OTC meds, Char.)  The thing with Flonase is that you need to take it every day as it works best on a cumulative basis.  Once I got that part figured out, it works much better.  I still have some dripping, but it is much more manageable.  The Flonase is a…[Read more]

What about a strip of the two-sided velcro that sticks to itself?  That could be fastened around the “handle” of the concentrator or strap of the POC and then around the canula,

I’m on Esbriet and don’t know if this qualifies me for a third shot.  Will ask my doctor.  For those of you who get a sore arm, I was told to massage the area when it starts to ache.  I did this when I got my first two shots and it made the soreness go away very quickly.  Stay safe, everyone!

Christie, thank you for your response.  I admit I feel much like a y0-yo with the question of transplant.   Until I see what my heart looks like due to the PAH, I won’t know if I can even be considered now, but I think about it.  It is good to know these feelings are normal.  I really appreciate this group.  I have learned so much from readi…[Read more]

I also have itching with Esbriet and I have been on it for two years now.  Backs of my hands, back, legs, ankles…you name it.  Lotion helps sometimes.  When it gets especially bad on the backs of my hands I have used cortisone cream, which seems to stop it.

(George, aren’t you clever, noting Bob’s avatar is a pup!)

Dennis’s comment about transplant being the only answer resonated with me.  I have not had an AE to date, but have recently been diagnosed with not only emphysema and IPF, but also PAH.  The idea of transplant has been very scary to me but when I was talking to a friend today, she said, “Not to be crass, but what have you got to lose?”  So…[Read more]

One more thing to consider right now is where you live.  Although I live in SW Virginia, the smoke from the fires out west and in Canada has made it all the way here and affected the air quality.  I have been staying inside because of it, but you might also want to be checking things like pollen counts and air quality reports.  I have coughing at…[Read more]

This question is a little different, but since you all are high oxygen users I am hoping you will have some answers for me.  I can use less oxygen when I am sitting quietly, but I need 10L when I am up and about.  I have my home concentrator in a central part of the house, not right next to me because of the noise and heat it puts out.  I don’t tu…[Read more]